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Landline - Anywhere in Australia - 25 cents
1300 663 845 (landline call from anywhere in Australia) (cost 25 cents)
7701# Conference number
Mobile phone - only inside these major capital cities - your phone plan cost
Perth (mobile call from inside Perth see warning below)
08 6103 8751
Brisbane (mobile call from inside Brisbane see warning below)
07 3166 2169
Sydney (mobile call from inside Sydney see warning below)
02 9438 7077
Canberra (mobile call from inside Canberra see warning below)
02 6112 6899
Melbourne (mobile call from inside Melbourne see warning below)
03 9948 2088
Adelaide (mobile call from inside Adelaide see warning below)
08 7002 8702
4444# Conference number
Mobile phone warning
The costs of mobile calls are nothing to do with the Advanced Prostate Cancer Support Group or with PCFA. They are between you and your phone provider (Optus, Telstra, Virgin, Vodafone, etc).
If you dial one of the capital city numbers given above from a mobile phone, the cost to you will be the cost on your mobile phone plan. If your plan gives you free, or low cost local calls, and you are in one of these cities, it should be free, or a local call. If your plan gives you free, or local cost national calls that should work too.
Be sure - call your provider, give the number you might be calling, and check the cost for you to call that number.
Boyo Boy, I thought it was impossible to have Pca without having Pca mainly affecting the PG, and your story shows just how the behaviour of cancer cannot always be predicted at all. But a friend of mine got Pca and was getting over the side effects of RP etc, and then he had a neck cancer, so docs searched, and found what they later thought must have been a secondary. He had minor surgery, EBRT then chemo, and he now OK, but he no sooner got better, and his doctor got an identical sort of thing, and died within 12 months. No wonder the word cancer scares the hell out of everyone. I see you've sort of got use the succession of treatment plans, plan A, B, C, D, E, F , G and still you have a fight. Abiraterone gave me 8mths and Psa is rising, but took 2 months to go from 2.7 to 3.2, so its a slow doubling time so now I may be given enzalututamide. Its highly likely that won't give much time. But Charles Mack didn't get much time on Abi either, then went to Enzal, and that didn't give much time, but then went back to Abi which gave 6years so the Enzal seemed to do something to make Abi more effective second time around. The trouble is that this sort of luck is something nobody else could ever count on, because there are so many factors involved with cancer spread that are not understood.
My father's mother died of Oa, he died of melanoma at 60, Pca status not known, but a sister died of Oa at 60, the other sister got Bca and didn't hesitate to have both breasts right off, and 5 years of hormone deprivation. She's OK at 73, but a bit mentally wrecked. While those things happened I just wondered when my turn would come to get Pca, and sure enough, I got a bad case, gleason 9, that was diagnosed maybe 4 years later than it should have because it didn't make much Psa, and in 2008, detection was still primitive science.
I'd not be surprised to find I have Bca mutations and nobody has mentioned that I get DNA test to find out what chemo would be best for me.
Another friend under 60 had had 6 x Docetaxel treats so far, he says he's just starting to suffer its side effects, but Psa is 2, from 40 before last X-mas. The ADT, cosadex, RP, RT all gave little betterment over a 2 year period.
Just how much does Cabazitaxel cost if you have to pay for it without PBS funding?
There are those who might not take a drug because of cost, and may suffer because of it. So the poor without home ownership have no access to getting a reverse mortgage, because banks don't much like lending to old folks, and this whole business of funding treatments is as alarming for some as the cancer is.
While getting 4 weeks of IMRT to PG in 2016 to increase total level for PG to 101Grey, I stayed at Cheshire Ryder in Melbourne, a real no frills lodging, and I met a lot other ppl who'd had far more RT than I had had, one lady was there for her 39th session of RT involving weeks of stay, and sure, she could have said she really didn't want to have any more RT. My sister had 4 lots of chemo for Oa which merely gave her some time to get some of her affairs in order, while leaving disorder in her daughter of 16 who is probably scared stiff about cancer.
What MBarry says gives me an idea to write to my oncologist to see what he knows, because I am drifting to needing chemo sooner or later - seems inevitable, and who knows what would work best?
But today was a truly beautiful sunny autumn day, and I cycled 80.2km, and up and down a few good hills, and averaged 23kph, and when I tell ppl I have Pca badly, they look in disbelief, so I tell 'em "Well, docs say I look real well too, shame about the terrible scans though, " and I try to be jolly about it all because life is somewhat short, and ya should not try ta be too serious all the time. After the ride, had a good feed, then worked 3 hours to get ready for some more concreting work at home. I can't wait to watch the start new season of The Hand Maid's Tale on SBS tonight. Life goes on a bit more.
Terry has spent 5 weeks in hospital recently, so I am sorry I haven't responded sooner to all the wonderful suggestions and advice.
It is early days but we seem to be having a good response to the first Lutetium treatment, naturopathy supplements, bone broth and exercises.
Dr Nat Lenzo and associates have been tremendous, even to the extent of a Skype consultancy and second opinion because Terry was still in hospital and unable to travel.
Many thanks for all the advice and responses that were forwarded to us. I and our family can't thank you enough for your support. This forum has confirmed we are not alone with this battle.
Kind regards, Tricia Hollyoak
Unfortunately Cabazitaxel is not funded in NZ.
As I have the BRCA mutation the recommended chemo drug should be a platinum based one. The one I will likely have is Carboplatin. Apparently they mix it with Docataxel(!) but I will find out more about that if it is decided as the next step.
My Oncologist did say that he would rather use Cabazitaxel (I presume over Docataxel) but the cost is prohibitive.
Thanks for your reply
You have not listed Cabazitaxel (Jevtana) amongst your treatments.
This chemotherapy may be better tolerated than docetaxel.
I guess your medical oncologist has discussed this with you?
(I can't find anything on BRCA and Cabazitaxel.)